A young girl has become Britain’s youngest double lung transplant patient.

Imogen Bolton received her new lungs when she was just five months old after she was diagnosed with the rare illness Alveolar Capillary Dysplasia (ACD), meaning her lungs were not properly formed.

The reality is that Imogen wouldn’t be here today if the donor family hadn’t made the decision to donate and we are all hugely thankful to them

Dr Helen Spencer

Weighing just 4.5kg, she underwent a seven-hour operation earlier this year at Great Ormond Street Hospital (GOSH). Experts believe she may be the youngest child in Europe to have ever had the surgery.

Imogen appeared healthy at birth but developed a respiratory infection when she was a few weeks old. She was admitted to hospital near her home in Brighton several times with breathing problems.

At one point her condition deteriorated rapidly and she needed urgent treatment to help her breathe.

She was then transferred to the Evelina Hospital in London where a series of tests and scans diagnosed ACD, an extremely rare condition with only a few known cases worldwide.

Doctors put Imogen on the transplant waiting list, despite very low odds that a suitable donor would be found. But just a week later, the family heard news of a match.

Imogen’s mother, Hayley, 30, said: “It all happened so suddenly. We knew most children needing organ transplants spend weeks and months waiting, and some never get the call.

“After the complete emotional rollercoaster we had all been through, it was a huge relief to see things heading in the right direction. The difference was amazing, and a few weeks after the transplant Imogen was back to her usual chirpy self with a smile for everyone and was back on solid food as we tried to get her weight back on.”

After several months in hospital, Imogen has now been discharged and is back home. She returns to GOSH for regular clinic check-ups.

Dr Helen Spencer, respiratory paediatrician and clinical lead for Great Ormond Street Hospital’s lung transplant service, said: “Imogen was born with a very rare lung condition that would have proved fatal without urgent lung transplant surgery. As she was so small the surgery was particularly complex but she has bounced back and it’s fantastic to see her doing so well.

“The reality is that Imogen wouldn’t be here today if the donor family hadn’t made the decision to donate and we are all hugely thankful to them.

“Sadly, last year 15 children across the UK died while waiting on the list for a suitable donor organ, so it’s vital that everyone considers signing up to the register. It really doesn’t take long to sign up, so we are urging people of all ages to do this as soon as possible, and to discuss donation decisions as a family.”